Beyond the Symptoms

By Rachel Clarke, A15

Tiffany Chen (right), OT15, discusses research in the Health Quality of Life Lab with (from left to right) Susanna Li, OT15, and Professor of Occupational Therapy Linda Tickle-Degnen. (Alonso Nichols/Tufts University)

Professor of Occupational Therapy Linda Tickle-Degnen recently received federal funding for groundbreaking research on Parkinson's disease, a progressive disorder of the nervous system. Director of the Health Quality of Life Lab, Professor Tickle-Degnen's research focuses on understanding and promoting positive social functioning and wellness in individuals with Parkinson's and other chronic conditions. She hopes to broaden both health practitioners' and patients' understanding of social and interpersonal aspects of living with chronic health conditions; her investigations examine non-verbal communications, cross-cultural healthcare, patient-practitioner relationships, interpersonal rapport, and the effects of social interactions on quality of life and physical health. 

Professor Tickle-Degnen (right), reviews images of participants in her research on how people living with Parkinson' handle social aspects of their lives with graduate student researchers, (from left to right) Susanna Li and Tiffany Chen. (Alonso Nichols/Tufts University)

Tickle-Degnen was drawn to studying Parkinson's disease for personal reasons: during her grandfather's struggle with Parkinson's, she says she felt that health practitioners underestimated his intelligence and capacity for feelings. Her first research studies showed that some practitioners misjudge emotional, social, and cognitive capacities of those with Parkinson's. In a 2011 study, Tickle-Degnen and her team assembled video footage of Taiwanese and American people with Parkinson's disease who had varying degrees of loss of movement and "facial-masking," the inability to successfully express facial emotion. Researchers showed the videos to 285 health practitioners in the United States and Taiwan—including occupational therapists, physical therapists, speech therapists, neurologists, and neurological nurses—who were asked to perform initial diagnostic assessments. Tickle-Degnen and her team found that practitioners generally assumed that patients with facial masking had high levels of depression and cognitive impairment and low levels of functioning sociability. In reality, the practitioners' initial assessments were generally uncorrelated with their patients' actual levels of happiness, cognitive capacity, or sociability. 

Professor Tickle-Degnen (left), with graduate student researchers (from left to right), Susanna Li and Tiffany Chen. (Alonso Nichols/Tufts University)

Another study delivered equally significant results. Tickle-Degnen and her colleagues tested the effectiveness of physical, occupational, and speech therapists' ability to improve the quality of life of people living with Parkinson's disease. The trial demonstrated that rehabilitation was effective beyond optimal neurological medication in promoting quality of life in physical domains, such as improving vocal communication, mobility, and reducing bodily pain. Therapeutic rehabilitation was less helpful for psychosocial aspects such as improving social support or reducing social stigma of the disease. 

In a follow-up study, participants discussed details on their daily life events. Tickle-Degnen and her team analyzed 500 transcripts of these discussions with a linguistic word count inquiry tool that automatically searched and categorized words. The analysis revealed that despite their physical disabilities, participants spoke about social aspects of their lives 3.5 times more than they talked about their physical problems. These findings indicated that social life was highly important for people living with the disease. Another study discovered that social interactions that emphasized positive events in participants' lives facilitated more facial movement and expressiveness in people with Parkinson's, while social interactions that emphasized negative life events inhibited facial expressiveness. 

Now Tickle-Degnen seeks to expand on her previous findings through two current research projects. One of the projects, funded by the National Science Foundation, is in an early developmental stage. Tickle-Degnen is working with Matthias Scheutz, a professor in the Department of Computer Science, to develop robots that will help facilitate social interactions for people with Parkinson's disease. 

The second research project, funded by a five-year grant from the National Institutes of Health, focuses on how people living with Parkinson's, including their family members or partners, handle social aspects of their lives over a three-year period. Tickle-Degnen, who sees gaps in current research, explains that it is difficult for people with the disease to effectively manage their social lives while tending to their physical health needs. Although the research is especially applicable to Parkinson's patients, Tickle-Degnen sees a need for socially-focused research in medicine, especially with respect to chronic health conditions that impede movement in daily activities and social interaction. "There is a need to understand how people manage their social lives in general," says Tickle-Degnen. "How is social life important, how does it affect their health, and their quality of life?"

Privately funded groups, such as the American Parkinson's Disease Association or the Parkinson's Disease Foundation, provide workshops and support groups that help people live with the disease and manage their social lives. However, little is known about the effectiveness of these practices and what is needed for them to be optimally effective. Tickle-Degnen hopes that her findings will lead to more effective community-based interventions that optimize medical management while also supporting patients' ability to participate in meaningful home and community activities. 

Occupational therapy graduate students in Tickle-Degnen's lab develop community outreach programs for diverse groups. For example, Tiffany Chen and Susanna Li help Asian Americans learn about Parkinson's disease and tips for healthy aging using occupational therapy methods. They also encourage group members to participate in the Health Quality of Life Lab's research. Through the research, Li says she has "learned so much about Parkinson's disease, and about how occupational therapy can transform peoples' lives." Students working in the Health Quality of Life Lab benefit as researchers as well. "Tickle-Degnen's passion and zeal for her work has definitely rubbed off on me," says Li. "She's a great mentor."

Chen created data management manuals and also helped with Tickle-Degnen's research by conducting interviews in order to assess how robots might benefit people with Parkinson's disease. "Working with Dr. Tickle-Degnen and at the lab helped to enhance my research and outreach skills," says Chen. "I have been able to learn how to connect with relevant organizations and create lasting relationships for potential recruitment." With the work of occupational therapy graduate students and other members of the lab team, Tickle-Degnen hopes to increase community awareness of Parkinson's disease and how it differs from conditions such as Alzheimer's disease. 

The lab has successfully facilitated relationships with community members with health conditions associated with aging, and their progressive research is certainly making strides towards understanding those with Parkinson's and improving their lives. "The research," says Tickle-Degnen, is "developing knowledge that helps people protect their social lives and the things that are most important to them."